Help Lucius Sol Find His Breath And His Rest

As many of you know, we have been on an unbearably long journey to solve the puzzle that is Lucius Daylover's chronic health issues. Before the age of 3 he already had 3 surgeries, which required a warrior amount of advocacy on our part, and a warrior amount of resiliency and bravery on his.

In October of 2023, he FINALLY had his tonsils removed, which we thought was supposed to solve everything. We saw an immediate improvement in his sleep, and it was like we got to watch a whole new child be born. His nervous system seemed less in constant fight-or-flight, he was less fatigued, the dark circles from under his eyes went away, he was able to do things he had never done before (because his hypersensitivity often prevented us from going anywhere that was new or featured people he didn't know in the space). We will never forget our closest friends remarking, "Wow, he seems like a whole new person, almost unrecognizable!"

While some problems went away as he was finally sleeping more, others remained. And for those that remained we sought early intervention (which we also had to fight for, pushing past initial denials and demanding he continue treatment). Right before his 3rd birthday, state services officially evaluated him, and he was deemed "socially and emotionally delayed", which was super validating for everyone. He qualified for an IEP and was admitted to a special preschool where specialists are working with him 4 days a week.

Around that same time, we began to notice some of his old symptoms of sleep apnea returning: noisy, constricted breathing at night, constant waking throughout the night, chronic night terrors, waking up fatigued with bags under his eyes, an increase in his hyperactivity during the day, an increase in his demand avoidance, and an increase in his fight-or-flight reactions and sensory disorders.

As his sleep lessened and stress increased, so did the rest of the family's. Immediately we got back on the phone with all of his specialists who started telling us there was "nothing that could be done because he's too special needs to comply with testing and intervention."

After months of unending research, phone calls, second-third-fourth opinions, refusing to take no for an answer, and demanding that things be put into his medical chart for records, we finally found our answer in Airway Dentistry. Immediately they were able to assess that, though removal of his adenoids and tonsils was absolutely the right call, it was only half of the solution. Lucius's lower jaw is moderately recessed, and his chin is also too close to his nose. This restricts the size of his airway, and the restriction gets even worse during sleep.

They sent us home with an FDA approved in-home sleep study, and through much trial and error (and grace on the Airway Dentist's part), we finally got 3 nights of data proving he has moderate sleep apnea (something we haven't been able to do because he is too autistic to comply with testing, and then everyone just shrugs and says, "sorry don't know what to tell you.")

His home sleep study was signed off by a board-certified medicine sleep doctor, making his diagnosis official.

The path forward is long, but we are going to do everything we can to avoid the CPAP route for several reasons: 1) His sensory issues and demand avoidance will likely not tolerate it, 2) The wearing of a CPAP mask will cause his jaw to regress even further, and also cause his upper jaw to not grow outward correctly, effectively kicking the can down the road and requiring major jaw surgery when he's older, and 3) we cannot seem to gain access to a sleep study that will help an autistic child, and insurance will not approve a CPAP without a successful clinic study.

The airway dentist gave us his first orthodontic appliance today, and we will be working with several specialists to get him to wear it. We need him to be able to wear it all night every night, and if we can get to that point, we will not only see immediate relief, but also it will encourage the palette and jaw to grow correctly, completely solving the problem for the future.

We additionally need to work with several different specialists on various nervous system and sensory issues and his demand avoidance. We also must begin myofunctional therapy immediately with a specialist who will help strengthen his jaw. All of this will take more time and more appointments than a neurotypical kid because it takes our Shoo a long time to warm up to any specialist, and a longer time to comply with treatment.

All of this will be happening out-of-pocket because Airway Dentistry and Myo therapy are specialties that are not covered by insurance.

We are starting with a goal of $8000. This will be put into a bank account of a village member who will serve as the angel investor/beneficiary, and will be used to pay for his airway treatment, his myo therapy, and the various ortho appliances he is going to need. His first appliance is $500 with $500 in testing before hand. His next appliance will be about $3000. If we have to fly somewhere to do a sleep study at a place that can handle special needs toddlers, we have no idea what that will cost.

If none of this works we may have to pursue more direct interventions that will be more expensive, but we will cross that bridge when we get there, and only after trying our damndest to make these milder interventions work first.

We feel very blessed to have access to a global and generous village, and we are incredibly thankful for how so many of you have shown up since day one. Literally we would not have made it this far if it wasn't for you all, because not a single specialist has ever pointed us in the direction of airway dentistry or myofunctional therapy. It was our global village who taught us these things, and sometimes even found the specialists we needed to see!

From the bottom of our fatigued but hopeful hearts, thank you. Truly.

-The Daylovers